Crohn’s or: How I’m Learning to Stop Worrying and Love the Bag by Calum Maclean
The ninth of October 2013 was a big day for me. On that morning I felt the chill of porcelain against my bare thighs for the very last time. It was also my final day with all my original internal organs as that evening I underwent a surgery known as a Pan-proctocolectomy, which is digestive chat for ‘everything must go’. By that point my weight had dropped to around fifty kilograms. I had red rings around my eyes, a protruding rib cage and, admittedly, glorious cheekbones. I hadn’t been able to enjoy a meal, a night’s sleep or the company of friends in months. I was, to put it mildly, fucking miserable. So, as I climbed into the car with my parents that morning, and we drove down to my usual hospital, I was in a strangely calm state, the same way I feel when I’m reading my poems in front of a crowd or sitting in a turbulent plane. It’s a state that says, ‘Well, this is happening.’ It was also my twenty fourth birthday.When I woke up some hours later (I’m not sure exactly how many as I was off my tits on sweet, sweet morphine) I still had the presence of mind to lift up the sheets and inspect my new partner. I was now the owner of a permanent Ileostomy. For those who don’t know, my Ileostomy is basically a rerouting of my remaining small intestine out the right hand side of the abdomen in what is known as a stoma. The stoma is contained within an ostomy bag that I wear under my shirt. When I looked down and saw it for the first time, I was shocked by how little I freaked out. Even when the drugs were sadly reduced the next day and I could think clearly, it didn’t feel nearly as bleak as I’d convinced myself it would. This had been the worst case scenario I’d been dreading for five years of doctor’s appointments, invasive tests and denial of my situation. Even after my consultant told me that surgery was unavoidable, and I was later hospitalised for an emergency course of steroids, blood infusions, and feeding through a nasal tube, I still held on to the idea that medication would sort it. So I insisted on trying a chemical treatment first, but that did nothing but delay the inevitable and give my hair the look and consistency of dry grass. Anything to avoid the knife.
Then, a few months later, as my condition worsened even more, I phoned my consultant myself and asked for the surgery. My case was now so severe that my only option was the biggest procedure; permanent, irreversible. I was terrified and convinced that I wouldn’t be able to live that way. I told members of my family that I’d rather die on the operating table since, it being my birthday, I could have perfect symmetry on my headstone. That was a joke, rooted in real feelings, which I still regret. It took six months of pain to drive me to that phone call, but in hindsight, I wish I’d done it sooner. I could have saved myself from some of the darkest times of my life so far, but I’m an idiot and I needed to hit rock bottom first.
So yeah, I am what the medical community call an Ostomate. I’ve never been a big fan of that term, I prefer to think of myself as a Ludo Bagman (one for the Potter fans). But why am I boring you with my tragic bagstory? Well, a few reasons.
Firstly, it’s coming up for the fifth anniversary of B-Day, which readers of paragraphs one and three will recognise as my twenty ninth birthday, and it’s put me in a reflective mood. It’s really quite irritating having to share your birthday with the thing that makes you the most self-conscious in life, but at the same time it was kind of a gift. Since having the surgery, I’ve been able to enjoy the cinema, wander the streets, and earn my own money again. I was recently able to perform spoken word to audiences in some wonderful venues, and a couple of dubious ones. Just being able to walk down to the shop, buy some food then carry it home is a nice feeling since I just couldn’t do it for a long time. I’ve travelled to Italy, America twice and sunny Dumbarton. That may seem like an anti-climax there, but climbing to the very top of Dumbarton rock on my own, not having to worry about sprinting to a toilet, and looking out over the Clyde with my hair billowing in the wind, I felt like a king.
Secondly, I had an experience recently where I realised that a good friend had no idea that I’d even had the surgery. This is entirely my fault. Obviously family and certain friends know all about it and probably stopped reading a couple of paragraphs ago, but one of my many bad habits is just getting on with things and not confiding in people when something’s going on. I did that all the way through University, especially during my post-grad, when it was clear to anyone with eyes that I really wasn’t well. When friends asked me if I was ok I lied to them, right up to the point where I was essentially Skeletor. On some level I think my early twenties brain had notions of illness being poetic, which is a brilliant idea, except that you have no energy, are too weak and paranoid to be creative and the walking corpse look isn’t exactly attractive to women. Not that they’re forming a queue these days either, but still, I was wrong to handle it like that. There were a few years that could’ve been a little easier if I’d just asked for the help that was available.
Which brings me to my last reason. ‘Thank god!’ the one person who’s still reading cries. Basically, Crohn’s is a chronic condition, there is currently no cure and it has a tendency to randomly kick the door in and interrupt my plans. I’ve heard a lot of people describe themselves as ‘battling’ the disease, but in my experience it’s more like a permanent flat share with an absolute bastard; the kind who brings his hipster friends, depression and anxiety, home to sleep in your bed, eat your food and shred all the writing you’ve been working on. So you just endure their presence until they sod off for a few months and you can get back on track. That’s called remission. Annoyingly, my surgery worked so well that I got used to them being away, almost as if they were in jail, but it seems that they’ve been released because my health has had some recent setbacks.
This year I’ve lost weight, spent months in pain, seen my energy levels crazily reduced and, after attempting chemical and steroid treatments again, I’ve been given an official date for a new surgery on the 6th of November. Good times. The plus side though, is that I’ve already been through much worse. This time my stoma is being transferred to the left hand side, so I’ll presumably have a pretty hefty scar on my right that I’ll be able to enthusiastically lie to strangers about. I think I’ll say that I got it in a stabby altercation with a shoplifting skater boy, since I’ve pissed enough of them off this year that that’s entirely plausible. Another benefit of course is that I’ll be able to experience my 30th birthday in 2019 without extra emotional baggage, so that’s kind of a win.
The gist is this; living with Crohn’s can be difficult, having a permanent Ostomy is also a mixed bag, but what really trips a lot of people up is trying to deal with it entirely on your own. I’ve felt instant relief literally every time I’ve told the truth to a friend or colleague and they’ve usually been really understanding and curious. I’m always happy to answer questions since talking about it makes it seem more normal and makes me feel less like an alien or a cyborg. Of course there are still regular moments, sometimes in the shower, sometimes lying awake at night or, for whatever reason, in the supermarket, that my brain will helpfully remind me of a painful and embarrassing Crohn’s memory. Or just the brutal realisation that I haven’t had a normal digestive experience since Gordon Brown was Prime Minister.
Yes, that’s a bit insane, but it’s just how my mind works. I get in my head about feeling different, and ignore any examples of people with the exact same condition or worse who’ve achieved some of their potential, fallen in love, had a family, or just live fulfilling lives. I hope one day I can get out of my own way, but I think writing this extended ramble is a shuffle in the right direction. I would never do something like this normally, but this year has been an eye opening one with family and friends being incredibly open about their mental and physical health, and I find that really inspiring. So I thought I’d be honest for a change.
I hope reading this wasn’t too much of a slog. I tried to spruce it up with some terrible puns but if you’ve made it this far, thanks. Take a toffee. Actually, take two, you’ve earned it.
Calum Maclean, September 2018
This section: Calum Maclean – poet and aspiring writer, Writing
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